If you had to choose between spending money on medication that could save your life, or using it for groceries, your mortgage, or a new furnace, what would you choose?
If this sounds like a no-brainer, as in your first thought was that you’d most definitely choose the life-saving drug because anyone would be an idiot not to, you most likely have never faced a decision like this.
But sadly, many Canadians make this choice every day.
Last month, I was waiting in the washroom line at Toronto’s Princess Margaret Cancer Centre — it was moving slow. The woman in front of me was wearing a bright pink shirt, the little bit of hair left on her head stood up in thin blond patches that waved back and forth as she tapped her foot urgently. When she finally got to the front of the line and scurried into the one available stall, I could see the reason for the hold up.
There was a woman who looked to be in her sixties, sitting fully clothed on a toilet, with the stall door open. She was leaned over her knees, one arm stretched down. Her fingers were clasped around a freckled hand that extended from underneath the partition between her and the stall beside her. I could hear someone crying. The freckles shook with every sob.
The woman on the toilet with her pants on looked up with tired eyes. There was a white rabbit’s foot hanging off of the strap of the red leather purse at her feet. “My daughter,” she said, her words stilted. “Breast cancer. Her medicine is $180,000. A month.”
$180,000. I wondered how many months she needed.
As I washed my hands, I listened to the tired woman go through some of the options, her voice shaky and without hope: refinancing the house she owned, getting a line of credit, going public with a GoFundMe campaign. The freckled hand didn’t answer.
Just 13 years earlier, a nurse told me the medication I needed to survive leukemia would cost $4500 for one month — dirt cheap compared to the thousands and thousands facing the woman in the bathroom stall, but a huge price tag nonetheless. Back then, I hadn’t given much thought to how much life-saving medication cost — I never had to. Besides, I suppose I always figured that if I ever needed a drug to make me better, there would be a way.
After all, isn’t that the way it works most of the time? In Canada, you can go to the hospital with appendicitis, have surgery, and leave the next day without ever opening your wallet. But it’s not the same with prescription medications or many life-saving therapies that can come with price tags that reach into the millions of dollars. And with numbers like that, it’s tough to be hopeful, especially when you are fighting for your life.
At the time, I had access to a private health plan — which I found out later would have only covered a portion of the $54,000 per year bill, still more than I could afford — but I was so worried that I wouldn’t be able to pay for the drug I needed that I didn’t bother checking with them. Plus, there wasn’t much time for back-and-forthing — I knew the sooner I started treatment, the better the outcome could be. I signed up for a randomized clinical trial instead, one that would get me one of two promising drugs without having to pay a thing.
As part of the trial, there were certain criteria that I had to meet. I needed to keep a journal of side effects and provide insights into my physical well-being and then explain my notes in detail to a nurse at each appointment. I also had multiple vials of blood taken every three months — one time there were more than 20 tubes — along with a bone marrow biopsy to monitor the cancer and give my doctor an idea of how well the treatment was working.
The biopsies were painful. I would lay on my side on the examining table, my back to the doctor, feeling the anxiety building with the noise of each of his movements: the paper ripping on the package of gauze that would sop up the cold iodine he would rub on my back to sterilize the area; the whooshing sound of the syringe as it filled with the anesthetic that would numb the skin on top of my hip bone — “this is the worst part,” he would always say, as I winced at the stabbing pain (it wasn’t the worst part); the white paper underneath me that rustled as one of his hands pressed down hard on my waist so I couldn’t move as the second needle went into my hip bone; and the eerie scraping sound as he chipped away to get the sample that would make a clinking sound as it landed in a glass tube. I would know he was close to done when he’d jokingly ask me to put my hand on my stomach to see if the needle had gone too far.
After a few years, the trial ended — along with the financial help — and with the cancer in remission, I once again stressed about how I would pay for the $150 per tablet daily treatment that I needed to keep me theoretically cancer-free.
When I contacted the insurance company that held my health coverage, they used words like “compassionate use” and “catastrophic coverage” when referring to the category of my medication — neither did a lot to ease my worry and stress about my health or my ability to pay. I looked into public health coverage as well, but my household income — which was decent, but not a lot and was also already spoken for with the expenses of a house, food and babies — put the amount that I would still have to pay at a virtually unattainable level.
Then I found out about a PSP — patient support program — that could help me pay for my treatment. Again — feeling so grateful and lucky, and with the help of a drug access navigator at the hospital — I was able to get in on a plan that would see the cost of my medication covered, this time, it was split between my insurance company and the company that made the drug. Still, the tenuousness of having assistance was not lost on me — after all, it couldn’t last forever, and it didn’t. When it ended, I once again had to rearrange my financial life to make room for the medication that was keeping me alive. Fortunately, there is now a generic which is cheaper — and while my leukemia buddies have shared stories of uncomfortable transitional side effects and allergic reactions to the fillers used to bind the medication, at least it’s an option that’s easier on our wallets.
In more than a decade of living with leukemia, I have met so many wonderful people living with diseases requiring treatments that put my $4500 cost per month to shame. Some have been able to access a PSP, or have the help of a doctor who cobbles together a treatment plan that both fits their budget and saves their life. Many others make huge sacrifices — they leave jobs and friends to move to another province that provides funding, they sell their houses for the extra cash, withdraw retirement savings or dig themselves into irreconcilable debt with multiple lines of credit and loans. All in the name of life.
And then there are those who skip doses and break pills into pieces to make treatments last longer, or order their medication from shady online pharmacies that offer rock bottom prices for bottles of pills with no labels. Worst of all are those who opt out of treatment entirely because of cost — who choose food for their family instead, or take exorbitant medication prices as a “sign” that they weren’t meant to live. Sadly, there is only ever one outcome in these cases.
The whole question around the way drugs are priced is nausea-inducingly complicated. There’s always a hum in the background of any drug pricing conversation — a sort of lilting tune that accompanies the justification of eye-popping therapy prices as a way to recoup expensive research and development costs. Add in the complex systems Canada has in place to determine how much we should pay for our medicines, how they are approved and who can access them, and well, it’s a lot for someone who is sick and tired to navigate.
Of course, sometimes the government comes in clutch. Just last week, the Pan-Canadian Pharmaceutical Alliance (PCPA) — which negotiates medicine prices on behalf of the provinces and territories — announced an agreement with the company that makes a life-changing treatment for Cystic Fibrosis. The $300,000 per year drug, Trikafta, which targets a faulty protein that causes the buildup of mucus that clogs the lungs and digestive system in people living with CF, will now be paid for in Ontario, Alberta and Saskatchewan. And advocates expect the other provinces to follow suit. Woot.
This is amazing news for the roughly 4300 Canadians who live with Cystic Fibrosis, but it’s also a reminder of the value of access to effective medications — we are talking about increasing a person’s quality of life, giving them the capability to have jobs and families, to love and be loved. From brain disorders and cancer to rare diseases and diabetes, and so many others — it’s time we figured how to make living as best as possible with a disease affordable for everyone.
This story appeared in the Healthing Weekender. Subscribe here.